Why Aren’t Never Smokers Screened for Lung Cancer with LDCT?

As you’ve probably heard, 25% of lung cancer patients worldwide are never smokers.  Like all lung cancer patients, the majority of never smoker LC patients are diagnosed with metastatic lung cancer, even though they often have no real symptoms.  How come lung cancer screening guidelines don’t suggest never smokers get screened for lung cancer?

Well, it’s all a matter of risk reduction.

Medical practitioners (and those who pay for their services) do not like to run a medical test when the patient might be put at risk for little benefit.  This is a concern if a test is not 100% accurate and follow-up procedures for a positive result are potentially invasive.  This is the situation with LDCT screening.  With today’s technology, a lung cancer diagnosis can only be confirmed with a biopsy, which is invasive and does carry some risk.  And, lung biopsies are not guaranteed to detect a cancer, even if one is present.  Lung cancer screening with low dose CT might generate a false positive (meaning the test says the patient has lung cancer when they really don’t). False positives could result in unnecessary invasive follow-up procedures with some risk to the patient.

For this reason, LDCT screening is only recommended for those who are at HIGH RISK for lung cancer. At this time, “high risk for lung cancer” means current or past heavy smoking history and age 55 to 75. These risk factors were not chosen due to stigma or discrimination. To date, these are the only two risk factor scientifically demonstrated to have a HIGH correlation with lung cancer in several studies. A very large clinical trial (the National Lung Screening Trial, or NLST) showed people who had these risk factors were likely to benefit from lung cancer screening with LDCT despite the risks of false positives.

For these patients at high risk for lung cancer, the benefits of screening outweigh the risks.  LDCT screening reduced their lung cancer deaths by 20% compared to screening with x-rays, simply by detecting the lung cancer before it spread and getting it treated early.  By the way, NO deaths due to LDCT screening occurred in the 53,000+ participants enrolled in the NLST.

Since lung cancer occurs in a low percentage of the never smoker population, the risk of screening doesn’t make sense for never smokers unless they have another high risk factor.

We know of other risk factors associated with lung cancer–radon gas in homes, air pollution, previous cancer treatments (especially radiation treatment to the lungs), exposure to certain hazardous materials, even an inherited gene.  However, analysis to date hasn’t shown any of these factors have as strong a correlation with lung cancer, possibly because it’s harder to track those risk factors in a controlled study.  As we learn more about how lung cancers get started, and how they differ from each other, we are likely to discover more HIGH risk factors that can be validated by objective analysis.

This definition of “high risk” and this method of screening are just the first steps in early detection for lung cancer. As more high risk factors (like the inherited version of the T790M gene) are validated by objective studies, people who have those risk factors should also be included in covered lung cancer screening, whether or not they have a smoking history.

As more accurate and less expensive lung cancer screening technologies become available, testing will become more accessible to everyone.  Someday–hopefully in our lifetimes–accurate lung cancer screening will be as easy as a blood test or spitting into a test tube, without the need for a biopsy.

So keep supporting more research!  We need accurate, affordable early detection of lung cancer in never smokers.

Why Advocates Seem to Talk So Much About Lung Cancer Screening

On Thursday, September 25th, 8PM ET/ 5PM PT, #LCSM Chat will discuss the existing barriers in lung cancer screening in late 2014.

Recently I’ve heard some lung cancer patients say they feel abandoned by lung cancer advocacy groups.  These patients think the groups are focusing too much on early detection with lung cancer screening, and have abandoned those who already have the disease.

As a metastatic lung cancer patient, I don’t feel abandoned.  I feel lung cancer advocacy has never been more vibrant or successful than it’s been in the past year.  In the past year, lung cancer advocacy has featured:

  • Wide-spread national media coverage about lung cancer: Valerie Harper on “Dancing with the Stars” and other national shows, national news coverage of testimony on Capitol Hill about the need for lung cancer research funding, the “Turquoise Takeover” of prominent landmarks, and Molly Golbon’s cancer journey documented on NBC, for example.
  • Print and online articles discussing the need to eliminate lung cancer stigma and featuring the hope offered by new treatments and clinical trials.
  • More advocates, patients, doctors, and researchers posting and collaborating with the #LCSM hashtag on Twitter.
  • An increase in lung cancer bloggers compared to last year.

The focus of lung cancer advocacy hasn’t shifted away from research or treatments.  By my count, there are more new treatment options offered or announced this year for a wider range of lung cancer types than in any previous year: two new FDA-approved targeted therapies,  immunotherapy trials for all lung cancer types, an innovative new trial for squamous cell LC, a new study of Young Lung Cancer, new targeted drugs for mutations, newly-discovered mutations … the list is long.

Lung cancer screening with LDCT is a big deal because it is projected to save 18,000 lives PER YEAR by catching lung cancer before it spreads.  That’s more lives than most new targeted lung cancer treatments will save in a year.

We’re seeing more public discussion of lung cancer screening than treatments for four reasons:

(1) Lung cancer screening with LDCT gained major support at the end of 2013.
In December 2013, the US Preventative Services Task Force recommended lung cancer screening with LDCT.  As a result, the ACA now requires private insurance plans to cover LDCT as of January 2015.

(2) LDCT is becoming more available.
More hospitals and clinics are beginning to offer LC screening with LDCT, and are advertising that fact.

(3) The need for support is urgent.
The majority of lung cancer patients are over age 65.  In February, the Centers for Medicare and Medicaid (CMS) began evaluating whether to provide insurance coverage for LC screening with LDCT.  CMS will decide in November.   We must act NOW.

(4) Individual advocates have a chance to make a difference that will save lives.
The CMS decision is being made by a branch of the US government.  Our voices are needed to ensure those over 65 have access to LC screening, since most of them have Medicare as their primary insurance.  Lung cancer advocacy organizations are leading the charge.

The lung cancer community is still dedicated to raising awareness for ALL lung cancer patients and increasing research that will allow more lung cancer patients to be cured or to live with lung cancer as a chronic illness.   Advocating for LC screening is just one way to help more patients survive.  It’s part of the 2014 sea change in lung cancer.

Speaking at 2014 Stanford Medicine X

I’m looking forward to attending the 2014 Stanford Medicine X Conference (#MedX on Twitter) as an ePatient Delegate September 5-7 on the campus of Stanford University.  The conference, now in its third year, is the leading patient-centered conference on emerging technology and medicine.

This conference will give me an opportunity to meet and interact with other epatients (engaged and empowered patients who participate in their medical care) as well as innovators who are providing the technologies that enable epatients to learn about their health conditions, track their health status, and share their experiences with others.  I hope this will teach me more about how to use social media to provide lung cancer patients with hope and useful information, raise awareness of our disease, and contribute to research and clinical trials.

I will be speaking on the MedX mainstage about “Making Lung Cancer Visible” on Sunday, September 7.  My speech will be in the Ignite format (5 minutes, 20 slides that automatically advance every 15 seconds), which will be a challenge for my chemobrain!  According to the 2014 MedX schedule,  my talk will be the second in a group of epatient talks that start at 10 AM Pacific Time Sunday 9/7; my talk should start around 10:10 AM.

If you’d like to watch my talk live, please sign up IN ADVANCE (FREE!) for the Stanford Medicine X Global Access Program.  This will allow you to watch all MedX events via livestreaming on the Internet.  If you’re unable to watch it live, my talk will eventually be made available on the MedX YouTube channel — I’ll post the link here when it becomes available.

Edit Sep 17, 2014:
Stanford Medicine X talk posted my talk on YouTube — see it here.

Can we erase lung cancer stigma without mentioning “smoking”?

Some people have indicated my previous post (Dear lung cancer patient who smoked) reinforces a division within the lung cancer community (those who smoked versus those who didn’t).  That wasn’t my intention.  In fact, it was a division I was trying to heal. If I offended anyone, I apologize.

Like any group of people, those of us in the lung cancer community are individuals.  We differ in many ways:  age, physical fitness, financial status, geographic location, family relationships, gender, sexual orientation, smoking history, nutritional choices, weight, desire for privacy.  Our close personal experience with lung cancer is the only thing we all have in common.

Lung cancer patients and advocates talk about the stigma of lung cancer (which is largely associated with smoking) because we and others we know have experienced it. It is real. If we don’t talk about the stigma, who else will?

One approach to erasing the stigma is to show the world the diversity among lung cancer patients. Somehow we need to show the public that lung cancer patients don’t fit one mold.  To do this, we have to reveal our differences. The perception of HIV patients changed in part because patients with different personal characteristics spoke out and showed the world the diversity among HIV patients.

The fact that we talk about our differences doesn’t imply any judgment or preferred categories among us, although some people will always attempt to pigeonhole people in that manner.  We can acknowledge our differences and still accept each other.  Attempting to show the diversity within the lung cancer community in no way implies any judgment that some personal characteristics or habits are “better” than others. But somehow, no matter how carefully phrased, discussions about stigma that involve the word “smoking” seem to make some people feel even more stigmatized.

If you have ideas how we can demonstrate the diversity within the lung cancer community without mentioning the word “smoking,” I’d love to hear them.  Please share them in the comments section here, in our upcoming February 13 #LCSM tweetchat, or in an email to me at jfreeman.wa at gmail.com.

Dear lung cancer patient who smoked

Dear lung cancer patient who smoked:

Please forgive yourself.  No one deserves to die from lung cancer. No one.

We have all done things that could impact our health. Do heart patients deserve to die because one of their habits might have contributed to a heart attack? Do I deserve to die because I used high doses of sugar and caffeine (M&Ms and regular Coca-Cola) to get through late night study sessions in college?

Most people who took up smoking did so when they were teenagers. It looked cool. It looked grown up. Others of us made different not-so-healthy choices at that age. Yes, it’s healthier not to smoke. But it’s not a sin that warrants the death penalty.

You had some help forming your smoking habit. The tobacco and entertainment industries made smoking look “cool” and “mature” through TV, advertising, billboards and movies, especially during the 50s and 60s. Tobacco companies upped the ante over the years by adding nicotine and other chemicals to their products that ensured their customer base got addicted quickly and stayed addicted.

Rather than asking whether you deserve to die, perhaps you should try asking who or what you have to live for.


A lung cancer patient who never smoked

#LCSM Chat 13-Feb-2014: “Brainstorming: How Do We Erase the Stigma of Lung Cancer?”

[This is a reblog of a post on the #LCSM blog.  Reposted with permission]

Erasing the stigma of lung cancer is one of the goals of all advocates who fight for more lung cancer awareness and funding.  But sometimes it’s hard to know how to go about it.

The focus of the #LCSM Chat on February 13 will be “Brainstorming: How Do We Erase the Stigma of Lung Cancer?”  Imagine we have unlimited funds, political influence in all the right places, ready access to every medical professional, and all the trained, eloquent workers we need.  What actions would erase the stigma of lung cancer?

Our moderator for this chat, Laronic Conway, will use these topics to get the discussion going:

  • T1: How would you erase lung cancer stigma among individuals? Billboards? Front-page articles? Doorbelling? Be specific.
  • T2: How would you erase lung cancer stigma among healthcare professionals? What would you need to do this?
  • T3: How would you erase lung cancer stigma among government officials and lawmakers? What would you need to do this?
  • T4: How would you erase lung cancer stigma among lung cancer patients and their families?

To prepare for this chat, you might wish to read some of the articles about lung cancer stigma on our new “Lung Cancer in the Media” page.

Guidelines on how to participate in an #LCSM Chat can be found on the “#LCSM Chat” page of the #LCSM website. Hope to see you on Twitter!

#LCSM Salutes World Cancer Day

[This is a reblog of a post on the #LCSM blog.  Reposted with permission]

Tomorrow, February 4th, is World Cancer Day. The focus this year is Target 5 of the World Cancer Declaration:  reduce stigma and dispel myths about cancer. The World Cancer Day campaign seeks to “Debunk the myths” of cancer:

  • We don’t need to talk about cancer
  • There are no signs or symptoms of cancer
  • There’s nothing I can do about cancer
  • I don’t have the right to cancer care

This focus parallels the goal of #LCSM “to educate, develop public support, end the stigma, and facilitate successful treatments for the leading cause of cancer deaths worldwide.”

On World Cancer Day, we hope the #LCSM community will take the opportunity to tweet about lung cancer as well as cancer in general.  Be sure to use “#LCSM” as well as “#WorldCancerDay” in your tweets so followers of both communities can see them. You can find a list of tweet-sized facts and the supporting documents on our Lung Cancer Facts page.  Or, if you prefer, just retweet #LCSM tweets that appear during the day.

Happy tweeting!

Prevention vs Risk Reduction Vs. Screening (a reblog)

Breast cancer survivor  @coffeemommy (Stacey Tinianov) gave me permission to reblog the  article below, which she wrote following the #abcDrBchat tweetchat about lung cancer Tuesday December 10 2013.  She’s written an excellent clarification of the differences between cancer prevention, risk reduction, and screening.


Prevention vs. Risk Reduction vs. Screening
by coffeemommy

After a series of particularly frustrating exchanges, I have decided it will take more than 140 characters to not only explain the distinction between prevention, risk reduction and screening in ALL cancers but to also explain why a distinction is so critical.

Prevention: definition 1. To keep from happening

Reality check:

  • The only way to prevent breast cancer is to not have any breast tissue.
  • The only way to prevent lung cancer is to not have lungs.
  • The only way to prevent skin cancer is to not have that
    useful covering over your flesh and bones.

You get the idea.

But wait! There’s this list you received from your doctor’s office, right? Certainly it’s titled something provocative like: “Prevent Breast Cancer” and includes some or all of the following:

  • Eat a well-balanced, low-fat diet
  • Exercise regularly
  • Limit alcohol intake
  • Maintain a healthy weight
  • Annual mammograms beginning at age 40

I did all those.

And I was diagnosed at age 40 with two tumors of invasive ductal carcinoma, diffuse DCIS and lymph node involvement in my left breast. Did I misunderstand the rules for preventing breast cancer and do something wrong? No. I didn’t. I tried to reduce my risk and it didn’t work. The above list may be a compilation of helpful hints but, even collectively, they do not prevent breast cancer, they help reduce risk.


Risk reduction in the spectrum of the healthcare industry attempts to lessen our chances of receiving a diagnosis by removing potential harmful exposures and/or behaviors from our lives and, in some cases, replacing them with behaviors that can help fend off disease.

To use skin cancer as an example, we can use sunblock liberally but we are merely attempting to reduce our risk. Skin cancer is still a possibility and a combination of exposure and genetics may render our efforts utterly useless.

Never-smokers without lung cancer who may feel they can cross malignant non-small cell carcinoma off their worry list should meet Janet Freeman who “never smoked anything except a salmon.”

And there are tens of thousands more who followed the list of “prevention” tactics but were diagnosed anyway. Specifically, even if you are a never smoker, you may still have some of the following risk factors for lung cancer:

Risk reduction is limiting exposure to the above but does not guarantee prevention. And a genetic predisposition is hard to shy away from.


If we refer back to the sage if woefully mis-titled “Prevent Breast Cancer” document above, I’d like to call out the last ‘prevention technique’ – the oft-touted annual mammogram.

People. People. People. Regular mammograms don’t PREVENT breast cancer OR reduce risk. EVER.

Mammograms are screening tools. Regular screening is encouraged so anomalies can be found as early as possible,be treated as quickly as possible and, hopefully, result in a better longer term outcome.


This is not a tomato – tomato (c’mon, you’re supposed to pronounce those differently when you read them!) issue. Why is the terminology distinction important? Three reasons bubble to the top for me:

  • Continued Diligence: Individuals must remain diligent in personal and professional screening even when they”do everything right” on the risk reduction list. Mammograms don’t “Save the ta-tas” they simply alert people as to whether or not their breasts are trying to kill them. I can personally attest to the fact that people who follow all the published rules for how to prevent breast cancer, and get a mammogram at 40, still get breast cancer.
  • Removing Stigma and Eradicating Blame & Shame: According to anecdotal data, the most common question lung cancer patients field is, “How long did you smoke?” If you advertise risk reduction as prevention you are perpetuating a falsehood. Perpetuating the idea that cancers are preventable implies that, when a diagnosis is given, somebody did something WRONG.
  • Redirecting Research Focus: While a list of ways to reduce risk for disease is helpful, such a list is not a magic bullet. Already genomic research is leading to personalized treatments. We need to expand efforts in this area. When the general public finally realizes that no one is “immune” to a cancer diagnosis, more focus can be applied in the appropriate areas.

Cancer sucks, no one “deserves” it. Please don’t propagate a false sense of security or imply wrongdoing by patients who are diagnosed by claiming cancer is preventable. Please choose your words wisely.

Yet another potential cause of lung cancer — and it isn’t smoking

On November 15, the California EPA’s Office of Environmental Health Hazard Assessment (OEHHA) announced it intends to list emissions from high-temperature unrefined rapeseed oil as known to cause cancer.

I reviewed the studies they cited. Animal studies found high-temperature unrefined rapeseed oil emissions caused lung cancer tumors (primarily adenocarcinomas) in mice and rats (note: unrefined rapeseed oil is not the same as canola oil). An Egyptian study I found while following citations indicates cooking with high-temperature cotton oil may also cause mutations in the lungs of mice.

This provides more evidence that lung cancer ain’t just about smoking.  I suspect with time we will find that no matter where we live, our way of life exposes human lungs to many inhalants that induce mutations and lung cancer.  For instance, the lung cancer mortality rate in Xuan Wei County, China is among the highest in that country, and correlates with burning smoky coal indoors to heat homes.  This study indicates that residents there who had a variation in a gene known to help detoxify coal emissions were more likely to get lung cancer — a genetic susceptibility combined with an environmental trigger to cause lung cancer.

Lung cancers in never smokers may be the easiest way to identify these substances.  However, I suspect we will find the genetic variations and tumor mutations present in never smokers affect smokers and former smokers as well. We already know that the EGFR mutation in lung cancer tumors, while more common in never smoker females, are also found in smokers and former smokers.

As an aside, I think life as a lab mouse must really suck.

Thanks to friend Richard A. Lovett for forwarding the cooking oil article to me.

Edited 12-Dec-2013 18:40  PT:
I incorrectly equated unrefined rapeseed oil with canola oil.  Canola oil is not the same as rapeseed oil.